.continuing on.

It's been a hot second since I've updated this blog and continued sharing our journey!! We've had quite an eventful past 6 or 7 months and I have so much to share. Writing on this blog and sharing our story has truly been such a necessary therapy for me and it's really helped me to process all that has come with Joubert Syndrome. I started a page on Facebook called the Unexpected Journey and I've just been uploading updates and different things there and kind of forgotten about the blog and how much I love to write.

We've reached some huge milestones and now have three walking kids in our house! Parker and Lane both decided they were done with their walkers in May and haven't touched them since! We knew they could do it for a while, but it had to be on their terms and when they decided they were going to walk independently, man they were off. 

It's crazy to see how in just the past few months their strength, balance, and coordination has improved significantly!!! I didn't realize just how difficult and exhausting it was having to physically carry them everywhere. I knew having physically disabled kids was tough, but it hasn't been until they are walking now that I am able to look back and see just how difficult that was. At one point I was 9 months pregnant with Elyse and carrying a 2 year old and 4 year old everywhere. I'm not sure how we survived but we did! And I AM SO THANKFUL that they have now gained the ability to walk.

Walking and the ability to have my hands free is something I will NEVER TAKE FOR GRANTED.

EVER.

They still are not walking and moving as a typically developing child, but they are doing amazing and have gained so much confidence and freedom that I am choosing to focus on that! 

We are also in the trenches of kindergarten with Parker and preschool with Lane. I didn't anticipate Kindergarten to be such a big and emotional step for us. Parker has been in the school district since he was 3 and this is his third year of going to school so I kind of felt like we had already done the school separation grief that most parents experience when their kid starts school.

But wow was I surprised when we went to school on that first day. It was so emotional and tough for Nick and I. We had to grieve his diagnosis all over again in many ways. It was very apparent when he was around all his peers that Parker was different and had many challenges that the other kids wouldn't face. Listening to the teacher and all of the expectations and skills that they have for the kids this year was overwhelming to me. I know where Parker's weaknesses and struggles are and it just seemed so apparent to me that this was going to be really tough for him. We did an activity with them and then they said goodbye to the parents.

Nick and I put our heads down and walked out of the classroom and broke down once we got to the car. It's one thing to let your child do, but it's another thing to let them go knowing they are going to struggle. But time again, the Lord has proved to be faithful and really answer our prayers. Parker has been doing so well in school so far and has really stepped up to the challenge. He's learning math, starting to read, his writing is improving, he's motivated to do homework, etc.

All in all it's been a great year so far. And although every morning at drop off I pray for God to protect him, strengthen him, and be with him, I know that he is in good hands with the staff and students at his school.

Lane has been doing amazing as well. He's such a physical kid and has blown me away with his walking. He's now jumping and running and able to keep up really well with his peers. He just had his yearly evaluation at physical therapy to measure his progress and where he falls, and he improved so much from his evaluation just a year ago. He's really not that far behind his peers, which makes it really exciting for us we get to look forward to watching him continue to catch up!

He also LOVES school and since he is only 3 still he is in a class with only other kids with special needs. Next year he will move to an integrated classroom, but we love the school and the team he has right now and he is thriving there so it takes some of the burden off of me since I trust them with Lane and his needs!

Not to be outdone but her brothers, Elyse is keeping us on our toes and giving us grey hairs!! She has such a fun personality and adds so much to our family. Such an unexpected and undeserved blessing but we are so grateful! While the boys are at school, sissy and I are busy doing mommy and me gymnastics, bible study, grocery shopping, and constantly chasing her around. She literally never stops! 

Life is good, Life is busy, But life is also hard. 

We are smiling and laughing and relying on each other to get through. God has entrusted us with these kids and we have been lucky to witness some of the most amazing miracles happen in them. We grow through the tough times and the grief that comes with their struggles and challenges. And try to find joy that comes on this Unexpected Journey.

.the doctors.

We just got back from a whirlwind trip to Los Angeles and I feel like everything that happened was all kind of surreal.

A few weeks ago our short film Joubert Syndrome: The Unexpected Journey was picked up by the Love What Matters Facebook page. This was a big deal to us because that page in particular has over 2.6 million followers and people that view the page. What a great platform to raise awareness worldwide! And so far there have been over 66k views of our video!

Shortly after that, a producer from The Doctors TV show reached out to us to see if we would want to come on to raise awareness and have a national platform to share our story. We jumped at the opportunity, and before we knew it, Nick, Parker, Lane and I were on an airplane heading down to LA. We left Elyse with grandma for the weekend since we wanted to make sure and focus on the boys and their needs during the trip.

These Ninja Turtles came in clutch on the airplane!

Layover in Portland on the way down.

We've felt a passion and a calling that God has given us a story to share and whatever doors he opens to do that, we would follow. Not only are we wanting to bring awareness to a rare genetic condition, but also hope to people facing unexpected circumstances. We all have things in our lives that are different than we imagined or "unexpected" if you will, and we feel that it's important to share that there is good that comes from the unexpected and hope through it all.

So the night before we left, we were packing and I looked at Nick in such a surreal moment and said "Is this really our life?!" It just seems like we have been wanting something like this to happen for so long, that when we were really doing it, it felt so surreal!

Breakfast our first morning. Coffee Bean & Tea Leaf is my fav!

All snuggled up!! The boys shared a bed the whole trip and did amazing!!

They put us up at the Hollywood Roosevelt hotel, which is a hotel right in the middle of Hollywood. The sidewalk outside the hotel is literally the walk of fame with the stars in the walkway and a lot of the iconic Hollywood places are right there. You could even see the Hollywood sign from our room. That was all pretty fun!

View from the window

Exploring Hollywood

I have to say though, Hollywood in general is pretty underwhelming. It's all very close together and packed and a lot of the production and things that you see on TV are not nearly as glamorous in person as they are on TV. But we enjoyed the novelty of it all and a chance to have a once in a lifetime experience.

Outside our dressing room

Behind the scenes in our dressing room

The morning of the taping, we were picked up in a van and got to the studio a few hours before taping. Hair and makeup came in to touch us up and make things look good for TV, wardrobe came and grabbed our clothes and got them ready, and then we signed papers, talked through the script and got mic'd up for the segment.

Even Nick got makeup!

touch ups!

Had to get a close up of my Stella & Dot I rocked on the show

I have to say, when they mic'd us up, I felt like that was the weirdest thing ever. Like we were so official or something! The boys even got mic'd up with these little bitty mics..it was pretty cute! The boys did pretty well with all the people coming in and out and were surprisingly calm and cooperative with all the commotion.

With my handsome Lane!

Parker getting mic'd up

Auntie Hannah keeping the boys entertained

They took Nick and I out a few minutes before our segment and the boys stayed in the dressing room for a few more minutes. Luckily, we had my sister in law Hannah there with us so she stayed with the boys and was a familiar face. 

All ready!

Selfie!

Walking on set was crazy but I never really got that nervous. I kept thinking I was going to get super nervous but I really had such a peace about everything. We met the doctors who were going to interview us and we got in our seats, and before we knew it the audience was clapping and we were starting. We were probably out there for about 10 minutes but it felt like 10 seconds. The time flew by and there were some pretty great surprises and generous donations to us and the foundation. The segment focused a lot on hope and staying positive despite our unexpected journey as well as on the specific therapies and equipment the boys need n a daily basis. 

Just a preview of some of the surprises!!

As soon as we were done, we took some pictures, packed our bags and were headed back to the hotel. We had some friends come up for the taping and we all went out to dinner after and then spent a few days after with family and friends in the area.

We loved our experience and are so thankful to have had this incredible opportunity. Nick and I love being able to do this together and cannot wait to see what the future holds for us and the boys as we continue our journey.

The show will air this Thursday, February 25th. You can go to http://www.thedoctorstv.com/local-listings and enter your zipcode to find out what time and channel it will be on in your area.

Thanks to you all for following our journey and supporting us through it! 

.continuing on the journey.

Just when I think that I've kind of figured out how to navigate this journey we are on, we get thrown a curve ball and I feel like we take a few steps back.

The past few months have been unbelievable for us. The boys have made so much progress and are hitting milestones we have always dreamed about. I knew in my head they would start to walk eventually, but I couldn't let myself believe we were as close as we are because I didn't want to put unrealistic expectations on them. 

And just like that, they have started standing on their own and walking. It's the craziest thing to me! I still feel like it's almost an out of body experience when I look over and see them walking without assistance. It's pretty amazing that I get to witness this miracle every day. And trust me when I say I will never take this sight for granted. We have worn out our knees praying for this day, and spent countless hours in therapy offices, on horses, in pools, etc. Doing anything we could to help them get to this point...and we are finally here!!!

It will still be months before they are completely walking without their walkers, but I just can't believe that they are even close to that!!

And with the excitement of their development the past few months, I have felt such a peace and gratitude for everything we are being blessed with. A reassurance that all of the boys and our hard work is finally paying off, and us trusting in God's plan is reaping some very physical and tactical blessings.

But then this week we were thrown a curve ball and I still haven't been able to fully accept or process through it all. I try to keep my expectations realistic and know that there are going to be some really tough doctors appointments and stuff the boys are going to face. I know the reality that they could very easily have kidney failure or transplant, liver issues, and retina deterioration or blindness. These are all a really ugly and unfortunate reality of Joubert Syndrome, and many kids have and are dealing with these situations right now.

So when we went to their yearly eye doctor appointment, I went in knowing that there could be bad news. I actually tend to get really nervous the night before and lose my appetite and can't sleep. So I had prepared myself that there may be some findings with the retina and was worried specifically about Parker because he had failed his eye exam with the school nurse.

The boys cooperated well and have become pros at all sorts of doctor appointments. They listen well, cooperate and the doctors and nurses always fall in love with their charm. 

I was so happy to hear that Parker's eyes look great and have dramatically improved and his eye sight is great and he adapts really well despite the other eye issues he is dealing with (nystagmus and strabismus). But I was so caught off guard when the doctor was really concerned about Lane. His eyes had worsened significantly since last year and has astigmatism (basically the curve of the eye lens causes images to be distorted). The astigmatism is not the same in both eyes, so he is tending to use his right eye much more than his left. Left untreated this could lead to some pretty serious issues and most likely would lose vision in his weaker eye. So they are putting Lane in glasses and hoping we can treat this early so that he has the least amount of issues in the future. 

My sweet baby Lane is getting glasses.

And I'm not sure why, but I am kind of devastated over it. And it's actually not devastating at all, but for some reason it is to me right now. 

I had prepared myself that there could be issues with the retina, and I had prepared myself that most likely Parker would need glasses, but I had never even entertained the idea that Lane would need glasses.

And the reality is, the biggest blessing in the world is that their retinas are healthy and show no signs of deterioration! And another huge blessing is that Parker's eyes are doing great and there is nothing to worry about with him. So I'm not sure why I am so distraught that Lane is going to wear glasses. I absolutely LOVE little kids in glasses and it melts my heart when I see little kids with them on. Like seriously I kind of am obsessed with kids in glasses. And we know a ton of beautiful and adorable children who wear glasses and are doing great!

So why is it such a big deal to me that Lane is going to be wearing them?? If anything I would have thought my reaction would have been excitement because I just adore children in glasses. But I guess I just keep thinking that it's one more thing to add on top of everything else.

One more appointment, one more medical expense, one more thing that is going to have to deal with, one more thing to make him different than his peers, one more reason to get bullied and picked on, one more thing to overcome.

And I hate that my mind goes there. I should be happy we found this so early and can work on getting his eyes stronger. And I should be happy because {hopefully} the glasses will be a huge help and he will be able to function at full capacity because he has the tools he needs.

But I can't help but say I am sad. And having to process and mourn through another unexpected turn in our journey. I'm still wrestling through this with my faith and why we have to live in a continual state of surrender. Why when things are going so well, we have to take steps back when we already have so much to overcome. 

I know *intellectually* the answers to these questions, but my heart and emotions aren't there yet. With time and growth and maturity I will get there. And I guess that's what this journey is mostly about anyways. My expectations and how God is using the boys to change my plans and use them for His purpose.

Stay tuned for a picture of my cutie rocking some shades in a few weeks!!

.video update.

It's been a month since we shared our Unexpected Journey video with you all and the support has been amazing!! The video has been shared hundreds of times, viewed thousands of times, and hopefully is continuing to bring awareness to Joubert Syndrome. Because we wanted to direct people to directly donate to the foundation rather than a crowdfunding site, we don't have an easy way to track the donations that have been made. We know from people who have told us they have donated that we are VERY close, if not all the way to reaching our goal of $10,000. If you donated and feel comfortable, please let us know how much you donated so we can track the progress! If you wish to remain anonymous, we completely respect your wish to remain private, but we do want you to know how much not only us, but other families affected by Joubert Syndrome appreciate your generosity. Thanks to everyone for being a part of our journey and watching our boys grow and develop!

You can email me at annaelyse@gmail.com :)

.straddling the fence.

Being a mom to typically developing kids is tough. Being a mom to special needs kids is tough. But I have to say, I'm really finding that being the mom to both is really tough. 

I attended a mom's group/bible study this past week (which I loved and can't wait to go back), but opening myself up and putting myself in new situations is hard. Not just because of the typical new situation hurdles, but because I am finding it so hard to balance being a mom and a special needs mom. And I know these two things go hand in hand, but there are some added complications that go along with this.

When the boys were younger, I was either working full time and not able to get involved in a lot of "mom's group" activities, or I was busy hustling them between therapy and doctor appointments and with their limited time and mobility, it made it really difficult to get involved in anything. So now that the boys are both in school and I just have Elyse at home, I figured it was time for us to try some of this out. Meet some new people, expand our community, and just have some fun!

So Elyse and I went and she did great getting dropped off and had a whole new group of little buddies she could play with. But I couldn't help feeling like an imposter the whole time, like I wasn't showing the whole truth of who I am and what my family looks like. Everyone thought she was so adorable (which i'd have to agree!), and saying nice things to her and I, but I was silently grieving inside. 

I was grieving the fact that this is the way it was supposed to be with the boys, I was supposed to be able to attend these kinds of things, and they were supposed to be able to go all these places with me. And I was grieving the fact that going there and being a part of this was the mom I had always imagined I was going to be. Instead of spending our time at therapy, we were supposed to be here. Seems like a small thing, but it was a trigger to the death of the dreams I had when I pictured what being a mom was supposed to be like.

And I loved being able to do it with Elyse, but I also felt somewhat cheated by the fact that the boys never got to experience this with me. 

All of the women I met at the event were fabulous and I instantly felt comfortable and excited about what I was going to learn and be a part of. But as soon as it came time to go over our discussion questions and chat among our table, I felt kind of panicked. 

 It's weird for me to be around people who don't know our story. And its such a part of who I am, that I can't not talk or share about the boys and what my experience has been like parenting. So here I am at a table with all new people I have never met and we got talking about our kids and I START TO CRY!!! Hello, waving my freak flag!! I mean who does that?! I was really embarrased after it, but they were all super gracious and kept asking questions and encouraging me to continue sharing. 

And I was thinking on the way home why I still cry every single time I talk about the boys, our journey, and what our life is like. It's frustrating to me in some ways, because if I want to continue sharing our story, and bringing hope to other people, I can't be so emotional every time it comes up. But on the other hand, I am someone who feels deeply and when it comes to my children, they are an extension of every fiber of my being and I love so deeply that I can't help but express that in my words and emotions.

I think I feel and take on so much of their struggles for them, and have a lot of fear and uneasiness about the future and their daily lives, that it manifests itself in any type of conversation that revolves around them. As well as the fact that this journey and being blessed with the boys has so profoundly changed who I am (in a good way) that sharing any of that brings a lot of emotion.

I always thought that if we were blessed with a typically developing child it would make things so easy. Any Elyse being added to our family has brought healing in so many ways, but it also has brought complications I didn't foresee and am having to process through. How do I parent in the way that I am able to with Elyse, but also include the boys and be transparent about who I am and why I am the way I am? How do I get rid of the guilt that I am able to easily do certain things with Elyse, but was never able to with the boys because of different circumstances?

It almost seems like it would be easier to be on one side of the parenting fence or the other, than straddling in the middle trying to figure out how to navigate both. But just like with everything, with time comes wisdom and healing and this will be a conversation and a situation that will be continual for me throughout their lives and something I will always be able to continue to grow in.

This parenting deal is no joke! I could have never imagined how much I would be changed and shaped and molded by having children. Every single day it causes me to rely more and more on the Lord for guidance because man oh man I definitely cannot do it on my own! But I am so thankful for gracious friends and other mom's willing to walk along side me as I figure this out, women who let me cry (!!) after just meeting them, and everyone who knows me and continues to extend grace to me every day as I am walking this unexpected journey.

**photos taken by the fabulous Melissa Babasin Photography

.balance.

Maybe it's the three kids, maybe is the special needs, maybe I'm not efficient enough with my time, maybe our schedule isn't set just right. But any way you look at it, I feel like finding a balance in life right now is tough.

While looking back at 2015 and looking forward into 2016, the word balance seems to be constantly finding it's way into my brain. If I could just find a way to balance the needs and schedules of the 5 people in our family, then setting goals, reaching new milestones and accomplishing tasks would be so much easier. 

Right??

At least that's what I keep coming back to. And maybe that's true, but I feel like trying to strike the right "balance" of everything in my life is like chasing a unicorn. Not realistic.

I'm reading a book right now by Lysa Terkuerst called "The Best Yes" and it's all about discerning and hearing God's voice to choose the Best Yes instead of every opportunity or yes that comes your way. I came across a quote that really struck me as I'm trying to figure out this whole balance concept. She said:

"The decisions we make dictate the schedules we keep. The schedules we keep determine the lives we live. The lives we live determine how we spend our souls. So, this isn't just about finding time. This is about honoring God with the time we have."

Powerful stuff!

It got me thinking of how to take a new approach to "having it all" or being "balanced". It's not just about fitting everything in, or making sure that I check the boxes on my to do list, but really about analyzing the WHY behind each activity. It is remembering that how we spend our days is ultimately how we spend our lives, so if I am constantly just in survival mode and trying to meet everyone's needs and keep a full schedule, I am going to spend my life stressed, overwhelmed, and incapable of doing anything really well.

And I understand that the season of life we are in and the parenting stage we are in is a very busy one. Its a very physically demanding job where there is little to no independence with my little ones and they are heavily reliant on me to do things for them. But I also recognize that I will never get this time back and I need to honor God with my time right now.

So what does that look like?

I wish I knew!

So I am now looking at 2016 as a year to honor God with my time and figure out how to create a schedule that does that. I'm hoping that as a result the hopes, dreams, and accomplishments I have set out for this year will become a reality as well.

I have a feeling it's going to be a great year!!